You can lead a rich and meaningful life while living with Wet AMD.
“I went for a scan in mid-November and was diagnosed with wet AMD. I couldn’t believe it and immediately lapsed into a state of denial and deep depression. I became a hermit, locking myself in the bedroom and refusing to come out for several days, save to eat here and there. I was refusing to cope with the diagnosis and pretty much wasted November away doing little or nothing, but feeling sorry for myself,” said John in one of the wet macular degeneration (wet AMD) market research interviews that I sat through and listened to.
The interviews revealed that people with wet AMD consistently reported at the moment of diagnosis they were overwhelmed by the shock from the news, the uncertainty of what was to come, and the fear of blindness.
Saving sight with Wet AMD treatment
There are 200,000 Americans confirmed to have wet AMD every year. It is the leading cause of permanent vision loss in older adults. The good news is there are treatments available that could restore the lost vision or prevent vision from worsening.
“I was seeing a retina specialist who gave me an injection in the right eye, and I have been having regular injections ever since. The injection has saved my sight… I can still drive. I can still read. I can do whatever I want to do,” said Melvyn Byres, a retired pharmacist living with wet AMD, in an interview conducted by the Macular Disease Foundation.
Wet AMD and self-identity
Another important finding from the market research was that many patients had trouble recognizing their self-identity when they lost their independence due to vision loss.
They lost key elements of what was meaningful in their lives, including work, hobbies, social circle, and the ability to do things or make a difference.
Larry, another interviewee, shared, “I am depressed because I’ve lost my independence. I cannot drive anymore by myself. I cannot count money. I cannot read street signs easily. My son has to go shopping for groceries for me…[they] are worried about me all the time, have to bring me food, and spend time with me dealing with my problems. I feel like an inconvenience.”
While losing vision and independence was the primary fear at diagnosis, the most frustrating and depressing part was not being able to continue the activities that defined who they were.
Leading a rich and meaningful life while living with wet AMD
Many people living with wet AMD have impaired vision or are legally blind. However, after some learning and adjustment, they have led a rich and meaningful life to realize their potential and make a difference.
“I changed my lifestyle and my outlook a lot. There are a lot of differences in your life. A lot of things you cannot do. But, then, as I say, you learn to appreciate other things,” said Elaine Kittson, who had lost much of her vision due to macular degeneration, in an interview organized by the Macular Disease Foundation. In it, she also humorously talked about some of the changes she made – from reading to listening to talking books, and from cooking to looking forward to what’s cooking with a glass of wine.
Recently, as a fellow Canadian, I was pleasantly surprised to see Bruce Horak starring in Star Trek: Strange New Worlds. He is an artist who worked as an actor, painter, writer, and composer. And he is legally blind.
Among his work, one of my favorites is a collection of portraits of people laughing. On his website, he talked about the inspiration behind his work, “Inundated with current events has lead to a feeling of despair. In order to combat this overwhelming sense of doom I begin each day by sketching a person laughing…finding laughs within the laughs is a true delight.”
“My dad said something to me that I will never forget. He said, ‘perhaps we can get to a point where we no longer grieve what is lost, but we celebrate what remains’…I realized that I had spent my whole life grieving 91% vision that I don't have and hiding the 9% that I do. And I wondered, you know, is there some way that I could celebrate this eyesight,” reminisced Horak in a video about an epiphany he had on his youtube channel.
It may be scary and frightening when you are diagnosed with wet AMD. That is normal. Learn how to live with wet AMD or even low vision. You can lead a rich and meaningful life. Celebrate with laughs.
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